Waiting...

Waiting for progress. I've been in hospital now for two and a half weeks, the last week here at Wellington. Boredom is a problem. I have plenty to do but no inclination to do much.

I could write forever on how bad the food is here, and even after talking to the dietitians and getting a free reign on what I eat. The food that is delivered is seldom what I have ordered. I asked for spaghetti on toast with melted cheese on top yesterday and what was served was a splodge of spaghetti on a plate, two bits of dry white bread and a couple of plastic wrapped cheese singles.

The nursing staff are over worked and I often have to ask for my medications hours after they were scheduled. In the Hutt things were much more relaxed and the staff very attentive.

The doctors can't agree on a treatment plan and won't have a full discussion about me for another week. So not a chance of getting out of here any time soon.

The respiratory doctor is treating me for relapsed BOOP with high dose steroids, std treatment. The Infectious Diseases expert (apparently NZ's top man in his field) believes that it's been the Nocardia bug that's been giving me symptoms that I've mistaken for BOOP and that we should drop the steroids back to a controlling dose (possibly with the erythromycin) and let the antibiotics do their work. He believes that high dose steroids is like putting petrol on the fire and that my already trashed body will be a train wreck if I stay on the pred.

I know this myself. The ID doctor wants me to believe in him and for me to push for the lower dose pred. I certainly can see the logic in what he is saying and I'd agree that it all fits. The bug could well have been with me since late last year or earlier. It's dragged my health down and given me lung problems almost identical to BOOP. By increasing the prednisone dose all I have managed to do is provide a better environment for it to grow.

The respiratory Doc disagrees.. But then nearly all the doctors here have never seen a patient with a massive Nocardia infection, or even a small one. The Infectious Disease man has seen and managed many.
I've devised a simple test.. I'm now on 60mg of pred, if I have relapsed BOOP I should see a huge improvement in my breathing by Monday. If I don't then it's the pneumonia from the Nocardia and I can advise the Docs to taper me back to where I was previously (20mg and backed up by erythromycin).

I just want some sort of functioning body at the end of all this and high dose steroids will rob me of that if used for another year.

I'm finding this all quite frustrating. Today I'm coughing non stop, phlegm is choking me and still no energy. Fits with the ID diagnosis, so there's some bright side to it all.

Had a meeting with a haematologist yesterday. He gave me a good check over and we talked about all my Hodgkins fears, symptoms and the lack of them. His final word was that in his professional opinion he is 99% certain that I am still in remission and that Hodgkins Lymphoma is playing no part in my current health problems. That is very, very good news. (Although Sarah and I decided quite some time ago that we would live life believing that to be the case).

Sunday June 12th

It's been a good couple of days. My health has now stabilised in so much that each day is much like the one previous. Although I have had periods where I have felt ill, over-all I can't complain. I'm no longer hooked up to oxygen or have cannulas in my arm.

However the point that I have stabilised on is extremely low. I can only walk two or three metres before I need to sit down completely exhausted. My heart racing and my breathing unable to keep up, as if I'd just completed a 100M sprint. Leaning forward, turning and adjusting my pillow, as I have just found out, leads to an only slightly lower level of breathlessness and fatigue.

The problem is I have almost no haemoglobin, and with lungs that aren't processing the oxygen into my blood to start with, what little oxygen that does get in has little chance of hitching a ride to my muscles.

Good news.. My heart valves are in good shape, so that's one less thing to worry about.
CT scan shows a small pocket of air and fluid still in my chest but it's considered small enough to resolve by itself. So hopefully no chest opening and washing out for me. Brain scan revealed nothing. (The doctors drag that old chestnut out every time Ive had one done)

Tomorrow I hopefully get to see the team of specialists and find out the master plan to getting me out of here. I also hope to speak to the dietitian and ask to be put on their special menu as I have now lost 10kg and it's still dropping. The food here is terrible and BOOP has a side effect of turning off your appetite, which doesn't help.
The Hutt hospital dietitian said I could have pizza and chicken! yum.. but then they transferred me to Wellington. I've survived the weekend on chicken salads and coleslaw in a bun. If I see another plate of boiled beans and beef strog I'll throw a very violent, if not brief, tantrum!!

Sarah and I have been blown away by the support offered and given to us by family and friends. In some cases by people that I've only had a tenuous link with, such as customers and acquaintances.
We both thank you all for all that you have done, and offered to do. You have no idea how reassuring it is to know that there's a whole team of people out there covering nearly all the bases for us. 

Cheers Guys, you are legends.